Executive Summary

Chapter 1. Introduction

The economic pressures of ever-increasing healthcare costs
and suboptimal health outcomes are driving the search for new
approaches to health management. Policymakers and even the
President now speak of the National Health Information Network
and interoperable electronic health records as necessary elements
of health care for the entire population. Based on multiple
studies and reports on the need for patient-centered health
care, public policy is attaching growing importance to the
role of consumers in managing their own health, in partnership
with healthcare providers.

Consumer-oriented e-health resources are meant to help consumers
manage the heavy demands of health management. Indeed, it may
be difficult for consumers to meet some of the demands without
e-health tools. “e-Health” is a broad term for
the heterogeneous and evolving digital resources and practices
that support health and health care. e-Health resources enable
consumers, patients, and informal caregivers to gather information,
make healthcare decisions, communicate with healthcare providers,
manage chronic disease, and engage in other health-related
activities. Most, although not all, of these resources are
available through the Internet. e-Health tools offer consumers
a broad range of integrated, interactive functions including
those listed below. Most tools support several of these functions,
generally structured around a primary purpose such as disease
management.

Health information—either a spectrum
of searchable information or more narrowly defined content

Behavior change/prevention—support
for a specific behavior change such as smoking cessation

Health self-management—tools for
achieving and maintaining healthy behavior in lifestyle
areas such as diet and exercise

Decision support—structured support
for making treatment decisions, choosing and evaluating
insurance programs or healthcare providers, or managing
healthcare benefits

Disease management—monitoring,
recordkeeping, and communication devices for managing a
chronic disease, usually in conjunction with healthcare
providers

Healthcare tools—means of maintaining
or accessing health records and interacting with healthcare
providers. This category includes personal health records.

These tools show great promise for enhancing the health of
users; at present, however, they fall short of offering population-wide
benefits. The national commitment to eliminating health disparities
and improving health literacy intensifies the need for a thorough
understanding of consumers and their requirements for e-health
tools. Some of the most important benefits of e-health tools—if
properly designed and disseminated—could potentially
extend to underserved Americans, who often bear the greatest
health burdens with the least support. Even as more consumers
become comfortable with the Internet as a health resource,
questions remain about the value of e-health tools for many
segments of the nation’s diverse population. This study
found that there do not appear to be intrinsic deficiencies
in technology or insurmountable access obstacles; rather, the
issue is that not enough tools have yet been designed and disseminated
with an eye to the diverse experiences, requirements, and capacities
of end users.

This study treats diversity as a key concept in analyzing
the e-health phenomenon. Its purpose is to identify and analyze
the critical factors influencing the reach and impact of consumer
e-health tools for a diverse population. It addresses questions
about what motivates and engages different users, reviews the
research literature, examines e-health dissemination models,
and identifies gaps and opportunities in policy, tool development,
research, and dissemination. The following vision provides
the guiding principles and the yardstick against which current
conditions are assessed:

Consumers with diverse perspectives, circumstances,
capacities, and experiences are included in the design of,
and have meaningful access to, evidence-based e-health tools
with strong privacy and security protections.

Diverse consumers have the skills and support to evaluate,
choose, and use e-health tools to derive benefits for themselves
and those they care for.

Healthcare organizations and practitioners use the
full range of e-health tools to engage and support diverse
consumers in their own health management as a routine element
of care.

Local, state, and national policies and programs support
the sustainable development and dissemination of evidence-based
consumer e-health tools to diverse individuals and communities,
including those served by safety net providers.

Alliances and partnerships facilitate sustained consumer
access to and use of e-health tools, consistent with the value
propositions and perspectives of each participating stakeholder.

Appropriate funding and incentives exist in public
policy and the market to enable sustainable business models
for tools with demonstrated effectiveness.

This report stresses that e-health practices have the potential
to be part of the solution to health disparities and other
health policy challenges if appropriate and useful e-health
resources are made available to a larger proportion of the
U.S. population than is now the case. So far, market forces
and fragmented public-sector efforts have failed to harness
technological innovation to improve population health. Some
observers worry that an uneven distribution of high-quality
e-health tools or consumers’ varying ability to use such
tools could worsen health disparities. The report proposes
that extending the benefits of these technologies to diverse
users requires public leadership, robust public-private partnerships,
and consumer-centric research, analysis, and strategies. The
entire effort must be connected both to the disease prevention
and health promotion objectives for the nation in Healthy
People 2010 and to the goals for the emerging National
Health Information Network.

This study explored the following questions:

What is known about population diversity that can
inform the creation of appropriate e-health tools and enhance
understanding of their uses?

How is the research base for consumer-centric e-health
tools evolving?

What factors in public policy and the marketplace
are influencing the development and dissemination of e-health
tools?

What gaps are not likely to be filled by market-driven
solutions and should be addressed by public policy and public-private
collaborations?

What approaches exist and might be expanded to connect
diverse groups of consumers with e-health tools?

The study team took a critical approach, searching below the
promising surface of e-health, to examine gaps between promise
and reality. The study draws on many earlier studies, reports,
and articles. In particular, it builds on the work of the Federal
Office of Disease Prevention and Health Promotion (ODPHP) Science
Panel on Interactive Communication and Health, which authored
a report assessing the interactive health communication field
at that stage (U.S. Department of Health
and Human Services, 1999). The present study identified
or confirmed several encouraging trends in the consumer e-health
arena and identified several issues raised in earlier reports
that still have not been adequately addressed. Literature reviews
of published and unpublished studies, an environmental scan,
interviews, and meetings with e-health researchers and developers,
public health officials, community technology professionals,
and other experts led to the following five findings:

Finding 2. A large body of evidence suggests
the effectiveness and utility of many consumer e-health tools.
The evidence is uneven across categories of tools and user
groups, however. Often, the tools are developed as research
projects and not easily available in the marketplace; conversely,
many tools in the marketplace do not have an explicit evidence
base. Consumers may not be able to access many evaluated e-health
tools that would be beneficial to their health, particularly
given the increasing demands related to personal health management.
(See Chapters 3 and 4.)

Finding 3. In addition to the lack of alignment
between evidence-based and popular tools, other significant
gaps include the shortage of viable and sustainable business
models, the need to protect health information privacy and
nurture public trust, and the need for ongoing quality assurance.
(See Chapter 4.)

Finding 4. The e-health arena comprises many
stakeholders besides consumer end users, including healthcare
organizations, purchasers, public health entities, employers,
community-based organizations, and others. Many are already
engaged in partnerships around funding, dissemination, research,
development, and advocacy. The personal health record arena
has generated early collaborations around a tool that may prove
useful to diverse user groups and provide a platform for multiple
e-health functions. Both coordination and Federal leadership
are needed to achieve the vision proposed in this report, possibly
modeled on these activities related to personal health records.
(See Chapters 4 and 5.)

Finding 5. Strategies for reaching diverse
audiences have been developed and have proven effective in
communities outside the digital and economic mainstream. These
strategies could provide models for new efforts to reach diverse,
often underserved audiences, complementing more standard market
approaches and widening the reach and impact of e-health tools.
In addition, future e-health dissemination efforts may be able
to leverage the networks they have already created. (See Chapter
5.)

As noted, the vision for consumer e-health tools that informs
this report emphasizes the importance of diversity and user-centric
approaches. Diversity has many dimensions, including but not
limited to cultural, economic, educational, and experiential
factors. This study confirmed earlier findings that little
consumer research is available, particularly at the subpopulation
level, to inform projections of who will use e-health tools
in general, who will use specific tools, and how the use of
these tools will affect their perceived and objective health
status.

The idea of health literacy is emerging as a powerful construct
for identifying the environmental and human factors that influence
the ways in which people interact with health information and
the healthcare system. Health literacy is defined as the degree
to which individuals have the capacity to obtain, process,
and understand basic health information and services needed
to make appropriate health decisions. The construct unites
the issues of individual and group capacity, access, and understanding.
Researchers and practitioners working on issues of technology
access have developed the closely related construct of “meaningful
access” to convey a similar idea that equipment and Internet
connections as well as skill development, ongoing technical
support, and appropriate content are all necessary to close
society’s “digital divide.” These constructs
are useful in assessing what is needed to make e-health tools
useful to diverse audiences. Digital disparities should be
a matter of great concern for public health and medicine because
many of the same segments that lack adequate Internet access
also have the highest risks of developing, or already have
high rates of, chronic diseases. If public and private policies
put greater responsibility for personal health management on
any of these population groups, then policymakers must give
serious consideration to the types of support—digital
and nondigital—that consumers will need to carry out
their responsibilities.

Significantly, there are indicators that Internet access is
growing in every segment of the population and that many of
these segments are ready to think about new uses of the Internet
and other digital technologies for health. Much more information
is needed, however, about factors related to users’ motivations,
engagement, and understanding regarding e-health tools and
the relevance of these factors in supporting greater use. A
scan of the current field of e-health tools indicates that
developers are beginning to address issues of diversity. However,
most strategies and approaches do not go beyond traditional
public health targeting based on demographic characteristics.
Although important, characteristics such as race and ethnicity
are mediated by many other factors, including age, life experience,
culture, health and caregiver status, education, and income.

This study brings together what is known about factors to
be considered when designing and disseminating e-health tools
for diverse populations. These factors include language; cultural
factors; socioeconomic position; disabilities; age, developmental,
and role issues; interest in health information; and attitudes
about privacy. If the vision of e-health benefits for all
is to be realized, the critical factors for user-centric design
will require additional research and integration into tool
design, development, and dissemination.

Several reviews of the research literature have noted both
the promise of e-health tools and the multiple factors that
limit their effectiveness. The literature review conducted
for this report focuses on which e-health tools work well for
diverse users and on where additional and different research
is needed to address disparities and improve population health.
This chapter uses the following attributes to organize the
findings from the research literature and assess their implications
for serving diverse populations:

Access

Availability

Appropriateness

Acceptability

Applicability of content

The review found that meaningful comparisons among tools and
across research studies are difficult if not impossible due
to the variety in tool design, samples used, topics covered,
and origins of the tool (i.e., research or market-based). Although
the literature review (and the environmental scan described
in Chapters 2 and 4
and Appendix 1) identified a large
number of tools, there are no standard, accepted definitions
for the purposes or functions of consumer-oriented tools. Most
of the e-health tools in the studies reviewed are multicomponent
interventions designed to affect many aspects of personal health
self-management, including prevention, behavior change, decisionmaking,
and chronic disease management. Each tool contains health information
specific to its intended purpose. Tools designed for a similar
purpose do not always contain the same components.

Although e-health tools have been developed for a wide variety
of topics and purposes, some appear to be better represented
in the research literature than others. Areas with the largest
numbers of tools are nutrition education, weight management,
tobacco cessation, cancer prevention and management, and diabetes
prevention and management. Although most of the tools studied
were designed for adults, some target children and adolescents.
Some tools, such as those for behavior change, are grounded
in a theoretical framework. Others, such as healthcare tools,
are emerging in response to market and policy demands and do
not yet have enough of a scientific basis to suggest that they
will have their intended effect. The study samples have a strong
bias toward persons who already use computers and have Internet
access.

The key findings, organized according to the attributes listed
above, are described below.

Access. Large numbers of e-health tools have
been developed, but it is not known how many people know about
these tools, how many are using these tools outside of research
studies and closed healthcare systems, and how many may be
willing to try them. Few, if any, data exist on the distribution
of e-health tools across the population or within subgroups.
The ability of interested users to locate and access these
tools, particularly those with credible research, is also unknown.

Availability. Many of the studies utilized
convenience samples or required computer ownership. This approach
has led to a disproportionate amount of information on Caucasian
women with higher education levels. The lack of diversity in
the research samples and limited evidence indicating differential
effects based on demographics suggest major gaps in knowledge.
These gaps include how to address issues of access as well
as the acceptability and appropriateness of personal e-health
tools for large segments of the population.

Appropriateness. Some tools have been developed
that target special populations, and some of these were developed
with input from the target audience. These studies show that
with careful attention to cultural, literacy, and technological
needs, successful tools can be developed for and used by diverse
groups. User-centered design and usability research (discussed
in Chapter 2), along with participatory
research methods, can be used to bridge the gap between what
designers and researchers envision and what the ultimate end
users find engaging and helpful.

Acceptability. People like e-health tools
and generally find them easy to use. Although usage seemed
to decline over time, the declines were not as steep as those
found in the control conditions. It is not known how this decline
compares to other intervention formats, such as in-person educational
or therapeutic programs.

Applicability. Many studies found positive
changes in knowledge and intention after just one interaction
using e-health tools. Findings on actual behavior change and
health outcomes have been less clear. However, many of these
studies may not have provided interventions with enough frequency
or intensity to bring about desired changes in these areas,
or they may not have used appropriate control groups. Many
studies relied on self-reported data to document change.

Chapter 4. Strategic Factors in Realizing the Potential of
e-Health

Consumer e-health is part of the broad cultural shift toward
using technology and the Internet as a normal part of everyday
life. The dynamic e-health arena is evolving rapidly in response
to multiple cultural and technological trends, market and health
system forces, and policy initiatives. The growing diversity
of the e-health market is an important sign of its vitality;
the momentum toward e-health now touches nearly every segment
of society, albeit to different degrees. Many stakeholder groups
besides consumers, patients, and caregivers are involved with
consumer e-health, bringing a broad range of interests and
motivations to this arena. Healthcare organizations and health
plans are major drivers. Table 4
summarizes stakeholder perspectives on the benefits of consumer
e-health.

Today’s e-health market also has many limitations, suggesting
the need for more concerted action by public and private stakeholders
to stabilize and strengthen this arena in the public interest.
In addition to those discussed in previous chapters, the limitations
include a lack of coordinated approaches to e-health tool development,
evaluation, and dissemination; a lack of sustainable business
models for e-health tools; the need for stronger privacy protections
to nurture public trust; and an ongoing need for quality assurance.
Achieving the goal of getting appropriate evidence-based e-health
tools into wide and sustained public use requires coordinated
strategies in the following areas:

Strengthening the links among e-health tool development,
evaluation, and dissemination

Building viability and sustainability for e-health
tool developers and suppliers

Protecting the privacy of personal health information

Assuring the quality of tools and services available
to consumers.

As the guardian of the public interest, the public sector
has ultimate responsibility for ensuring these limitations
are addressed. Government-coordinated strategies in these areas
could support existing public programs and help advance a number
of important public policy goals, including supporting consumers
in taking more responsibility for their health and eliminating
health disparities. Government cannot achieve these changes
by itself, however. The stakeholders who share an interest
in consumer e-health—including consumers, developers,
and researchers as well as healthcare organizations, purchasers,
employers, and public health programs—are all potential
participants, in various combinations, in efforts to enable
more Americans to enjoy the benefits of appropriate e-health
tools. Current joint industry-Government activities to stimulate
the development, dissemination, and adoption of electronic
health records may provide a useful model of a concerted, large-scale
effort of this kind.

Chapter 5. Partnerships for Meaningful Access

A variety of models have been developed—both in the
healthcare and public health fields and in the wider arenas
of community development and civic life—to build new
constituencies for technology in the public interest. The final
chapter of this report profiles organizations and projects
in the public and nonprofit sectors that use creative strategies
to reach diverse and underserved communities. These strategies
include:

Using the existing community infrastructure to provide
training and open access in underserved communities

They involve a large number of partners and stakeholders,
as demonstrated particularly well in an example from California.

The projects use participatory approaches that engage
consumers not only as targets and recipients, but also
as cocreators of content and services. They are created
for, by, and with diverse communities.

They offer sustained, continuous services at the community
level. Library programs exemplify this attribute, although
their longevity cannot be taken for granted.

Finally, all these projects leverage significant resource
commitments from a range of sponsors—including Federal
agencies, industry, and foundations—and serve as important
vehicles for their sponsors’ missions and program objectives.

All these principles and attributes will be critical for future
initiatives to widen the reach and impact of e-health tools.

Conclusion

Today, more and more decisionmakers are interested in e-health
tools as critical components of personal health management
and healthcare reform strategies. Decisionmakers are seeking
viable approaches to reduce healthcare costs, improve the quality
of care, and increase consumers’ ability to manage their
own health. Conditions are favorable for a greater investment
in consumer-oriented e-health tools. The technology marketplace
is dynamic; the public is increasingly turning to information
and communication technologies for a better life; healthcare
organizations are adopting and offering health information
technology; and Government policy is placing great emphasis
on both health information technology and personal health management
for consumers. Such activities are now part of everyday news.

Since this study began, the Federal Government has embarked
on a major initiative to increase the use of health information
technology by healthcare providers and consumers. The creation
of the Office of the National Coordinator for Health Information
Technology within the U.S. Department of Health and Human Services
(HHS) provides a strategic opportunity for the Federal Government
to exercise the kind of leadership called for in this report.

Improving population health and personalizing health care—key
components of the vision underlying this study—are two
of the four goals articulated in HHS’ Framework for Strategic
Action for health information technology. The vision and approaches
proposed in the present study should be useful in realizing
both the population and personal health goals.

The present study seeks to lay the foundation for a robust,
population-wide, and consumer-centric e-health enterprise.
It outlines a vision, identifies challenges and opportunities,
and highlights strategies for using e-health tools to improve
personal and population health. A central message is that no
single tool or strategy will work for a national population
with highly diverse interests, experiences, conditions, and
capacities. This study found that, at present, the well-documented
diversity in this country is not well matched by the diversity
of strategies and responses in the e-health arena. This is
the case for e-health tools themselves as well as the policies,
funding, and program priorities that influence their development,
evaluation, and dissemination.

Realizing the potential population health benefits of e-health
tools requires not only a shift in thinking and strategies
but also strong leadership to coordinate marketplace and policy
momentum for maximum public benefit. Disparities in access
to health information, health care, and technology make it
highly unlikely that market forces and fragmented public-sector
efforts alone will achieve desired public health goals. Consistent
with other Government initiatives, public-sector engagement
in partnerships that harness current consumer trends and align
the multiple interests of stakeholders is crucial. The way
forward for consumer e-health is to use these partnerships
and interests to create and sustain a user-centered strategy
that results in e-health tools being available on a much wider
scale than is currently possible.